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Ulcerative Colitis
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Posted 10/17/2012 1:16 PM (GMT 0)
Went to the doc yesterday..Was so excited, now my daughter is down to 8 bathroom trips a day with no blood (from 18-22x a day), & appetite is humongous. Was hoping to start tapering off prednisone as she has been on it now for a month and has a very round face. She has her energy level back, & now only wakes up every other day in the middle of the night to go the bathroom.

Though doc was positive in the good changes that has been happening, it seems it wasn't enough. We are going to try a slight tapering to see how it goes, but she is very skeptical to begin the reduction. She will try 40 mg day 1, 35 day 2, 40 day 3, 35 day 4, etc. Next week try 35 day 1, 30 day 2, 35 day 3, etc. We are to see her when we get to 25,20 tapering to see if it will be possible to go lower. She was not positive on thinking we would completely taper off.

She expected by the 2nd Remicade that my daughter would be going less that 5 times a day, and typically doesn't wean off steroids until the bathroom trips are at 5 or less. She even talked about doing a few more boosters of the Remicade before she continues at the every 8 week treatment. Ugh...

So for those that have experienced remission, or manageability of UC, what does this really look like? We both were so excited thinking she is so much better... felt deflated afterwards.
Posted 10/17/2012 1:26 PM (GMT 0)
Hey Supportive Mom, I totally understand. I can tell you that Remi was a lifesaver for me, and it let me pick up and continue with life again. I have to agree with the doc, 8 bathroom trips is still a lot. One interesting point though is that when I started Remi, I felt better immediately but my brain still had me running to the bathroom anytime I felt like I was going to need to go. I felt like I had to retrain my brain that I could hold it. Ask your daughter if she still has urgency and when she goes poop, does she really have to go? Sounds silly, but when you have had accidents it's mind over matter! Remember, she's been sick for a while, so it will take time to heal as well. Take care and chin up! :)
Posted 10/17/2012 2:05 PM (GMT 0)
well she is starting to do better so be hopeful :) No blood to me is a very good sign.... I think with all that she has been through a slow wean makes sense.  As far as remission, it takes time for the colon to heal, sometimes longer than you think.  I have been in the situation where i tapered or stopped helpful meds too soon and it backfired on me, so now i am very cautious about things.  I understand wanting to get off pred, I really do.  How old is your daughter.

Posted 10/17/2012 3:51 PM (GMT 0)
I would still be happy if I were you, she is showing improvement, and she is starting to taper, perhaps not as fast as you would like, but its something. I think the doctor is just being cautious, I'm sure none of you want to do something to fast, just to have to flare come back full on again. Give it time, and be patient, hopefully with time she will be basically back to normal.

- Adam
Posted 10/17/2012 5:24 PM (GMT 0)
My daughter is 12 & handling it quite maturely I have to say. I hope there is some type of human body report at school or something because she would so ace anything to do with the whole digestive track!

I think we just just can't remember "normal" and this seems to be normal enough for us. Patience is a hard virtue to have with this! Sometimes I wish these drugs worked like tylenol to a headache; you take the tyenol & the headache goes away. Still cant wrap my head around all of this medicine just making this manageable. ugh!
Posted 10/17/2012 5:26 PM (GMT 0)
This taper seems weird to me. We usually do 40 for 7 days, 35 for 7 days, 30 for 7 days etc. However, it may be different for a 12 year old than it is for a 40 year old. Be patient, it is getting better, but it is going to take time. I have heard that in some it will take up to the 4th infusion. hang in there!!
Posted 10/17/2012 5:28 PM (GMT 0)
Ah, yes, so many meds! I too wish it were as easy as taking a Tylenol. I think you should ask her teacher to have a test on the GI tract just so she can ace it! lol. Just kidding! Take care and I think she is doing much better.

Posted 10/17/2012 5:52 PM (GMT 0)

oh my 12 years old, it just kills me to see kids get this disease, sigh. I have a 12 yo son (no UC) its an interesting age for sure, with or without uc.

ive got to say that UC is just the weirdest disease, everyone responds so differently.  I had a 15 year remission with NO meds and NO changes in diet.  then i had a 4 year flare up where i took my meds religiously, tried every supplement, probiotic, homemade kefir, tried diet mod (no gluten , scd) and none made any difference in my uc. makes no sense....

hang in there, slow improvement is fine, the colon needs to heal.  remission is possible, and i hope your daughter gets there soon, hugs to both of you

Posted 10/18/2012 12:28 AM (GMT 0)
Thanks for all the positive vibes!

The tapering off is not typical for our doctor either. She says the only reason she is even attempting a tapering is because it will be 6 weeks of steroids, & two of those weeks were 150 mg. The feeling I got was that the doc doubts tapering is a good idea and is only doing so because of the round face & other side affects with her age. Something tells me we will be back on it again.
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